What we know this morning.

What we know this morning is that Kendall is stubborn.

She is refusing to let go of these fevers, although the numbers are slowly slowly getting lower, so we think we may be starting to pull ahead.

In rounds today this is what I heard as Kendall’s diagnosis at the moment : “Bacteremic sepsis with unidentified yeast, in DIC, influenza positive, lactic acidosis.” Translation: she’s kinda up **** creek without a paddle. Right now her blood is just overtaken with the bad guys, and they are eating through every single one of the good guys that your blood is made of that helps your body do what it’s supposed to do. “DIC” is a bunch of long words that mean basically her body’s platelet counts are dropping. don’t google it. you won’t understand much except for the parts where they say “septic DIC has a high mortality rate”. That is not what Kendall has right now. She just is having her platelets eaten through by the bad guys faster than she can make it. The influenza part is kind of throwing everyone off because she is not acting real respiratorily challenged right now (as they would expect with flu symptoms), except that she is on 1L of oxygen to keep her sats up right now, and has essentially not moved position in three days. All i mean by that is that she just isn’t moving around enough to move junk through her lungs, and I am afraid that she will all of a sudden pop positive with “respiratory symptoms” just when we least expect it. And the lactic acidosis…well, that doesn’t mean much except it is opening the eyes of more than a few of her doctors here that maybe her mitochondrial disease is more at play than just a few words on a piece of paper. (Part of the reason we sought treatment/confirmation in Pittsburgh of the mito was because some docs here at CHW do not “believe in” mitochondrial disease. Kendall has spent the better part of the last few days making believers out of them!) Her lactic acid levels are RARELY even in the bottom range of most lab values. her body just doesn’t convert pyruvate to lactate really well. So to have hers almost triple the high values, on multiple repeat draws (because it is such a sensitive test), is really eye opening to me (keeper of all her labs in the steel trap of my brain), because it shows how very hard her little body is working right now.

so that is all the medicalese of what she has going on.

In reality, we have a very very tired baby, who is retaining a lot of fluid right now. We don’t know if that’s just because her body is doing what it needs to to try to flush the bad guys out, or if its a sign that her kidneys are trying to sit this round out. she is acting otherwise quite dehydrated, so every once in a while, they will come switch which fluids are running, and crank the rate up really high, and try to force her body to pee all that fluid off. No one really wants to start messing with more meds to make her do this because we just aren’t sure which way is up right now. We don’t know if we are more actively fighting the yeast sepsis, or if its just the natural course of this horrible flu bug in a kid who just does not do viruses well at all. We are trying to back off and let her body tell us which way its going, and what its going to do.

Ben and I don’t quite understand all of the intricacies of what is going on from a medical standpoint. (believe it or not, there ARE things I don’t know! i know – shocking.) But we do know this: her body is very very tired right now. From fighting some major bugs, and from not sleeping well at home for a few days prior to coming here where sleeping is a joke (because every two hours they are coming in to do some other new invasive thing – take her blood pressure, take a rectal temp, give more tylenol suppositories, switch her bag of fluids, listen to her lungs, etc.) Even if we combine all of those things, there are still other things that have to be done at the next two hour mark.  Her pain levels from the surgery last nite as well as the aches and pains of having the flu plus all the lactic acid in her body (lactic acid is the reason you cramp up after a good workout – at her levels, it has to feel like lifting weights for about 10 straight hours) mean that anytime she is touched or moved, she is reeling in pain. It takes her a while to settle back down from this, and then she is able to rest for about an hour before the process starts all over again.

Her heart is still working very hard to keep up with the demands of all the extra fluid in her tissues as well as the high fevers, but it is not throwing too many extra beats in like it has been the past few days. In fact right now, it is at the lowest numbers I have seen since tuesday. I hope this means she is getting good deep sleep, the kind of sleep that restores your energy, and your ability to fight against some of the nastiest bugs you have ever had to fight before.

The ID doctor (infectious diseases, the docs in charge of figuring out what bugs we are fighting and how we will fight them) just came in and talked with us about our plans for the next few days. We are needing to get a better look at her heart and some of the major veins and arteries coming off of that. Because of the DIC issues, we need to look for clots that could be in or around some of those places, possibly harboring a nice little enclave of infected cells, as well as posing their own threat. She will be having a sedated echo tomorrow to give them a good look at that. Depending on if there are clots or not will determine what kind of next steps we have to take with regard to getting better access (IV placement). right now kendall’s gut is still most definitely in “shutdown land”.  Because TPN is how she was being sustained prior to all of this craziness, TPN is what we need to restart, because we will never be able to restart her gut unless she has enough nourishment to sustain herself. It’s a bad cycle.

I know that there is a lot of info I am just throwing out that sometimes doesn’t make sense, so let me try to back up and explain a little bit of what is going on.

Bacteria love plastic. Let’s just get that out of the way. Plastic things in warm bodies are the preferred plastic residence. Kendall’s G-J tube is one place that the bad guys like to hang out, as we usually see when we change her tube. She has lots of little bad guy colonies just growing like barnacles on a boat on that foot-long tubey. And the new port is also a fun hideout for the bad guys. When you have the kind of major malfunctions with the needles that we were having, it was a setup for bacteria to get into her port via the needle, and then to her bloodstream (hence the bacteremia, or blood infection). While all of the docs felt that the fevers are coming more from the flu than the bacteremia, yeast is not something that you want to mess around with. It is VERY hard to kill it out of the bloodstream. Kendall is truly starting down a very long road to “health” and recovery. and the best way to start that was to remove the port, because there was some risk there that yeast or bacteria had already set up camp in and on the plastic of the IV line (catheter), and to leave it there would mean only that as soon as we stopped antifungal therapy, it would grow out of control again.

So that is why her port was removed last nite. A new “peripheral” IV (the kind of IV you typically get when you go into the hospital, it just means one that is placed somewhere on your arm or leg) was started last nite when she was asleep in the OR, so the anesthesiologist made it look real nice and pretty, but beyond that, made sure it is deep enough into the vein that it will last us for a few more days. Right now Kendall must have IV access. She is once again getting no real “nutrition” except the sugary carbs and calories in her D10 IV fluids running into the IV in her foot. This will work, we hope, for 2-3 days. D10 is VERY hard on peripheral IV’s because it is like trying to force syrup through a coffee stirrer-straw. In a kiddo who already doesn’t like to keep peripheral IV’s for more than a few hours, this is not a great combo. But right now, its the best way to go. We want to give her body the best shot possible at really killing ALLLLL of the bad guys that are hanging out, and to do that, we need to have 3 clear cultures (a culture is where they pull a blood sample and let it grow in the lab to see if there are any bacteria or yeast still growing in it.) Since we are hitting her pretty hard with antimicrobials and antifungals, we SHOULD start getting some clear cultures here, hopefully starting with todays. Last nite’s was looking clear for a LOT longer than the first two days’ were, so that is hopeful. (well, to me it is at least. the doctor wasn’t too excited about it. But i am all about the baby steps. i’ll take winning in any way I can right now!)

While we wait for those three clear cultures though, we are relying on this one IV in her foot to be able to keep up with the D10 we have to keep running at a pretty good clip in order to keep her hydrated, keep her blood sugars up, keep her getting some kind of energy source so she can continue fighting on all the many fronts she is fighting on. This is a very very tall order. We are trying to make this IV last as LONG as we can, hoping it will last until we get clear cultures. While i do believe that God can make that happen, we do have an OR schedule to deal with, so we’re trying to make a plan B. If her peripheral IV blows, and/or she is showing us that she needs more nutrition than the D10 is giving, we will go down to IR and have a PICC line placed. A PICC is something she has had a few times in the past, and is still technically a form of a central line in that it threads all the way to the heart, but has a slightly lessened risk of infection with what we are already fighting, and is very easy to take out if it does happen to reinfect.

I think there are two camps of thought at the moment, but both of them are hinged upon getting SOME clear cultures, and having at least a couple hours where we have NO fever. Neither of which has happened yet, so she is still very much in the fight portion of this journey. One camp is to place a PICC, continue tpn at home, continue antibiotics/antifungals at home, and re-address her access needs in a few weeks. The other camp is to keep us here for the long haul of sorting out all the bacteria/yeast issues, sorting out her gut issues, going really slow with going to a PICC, and then back to a port, but basically not letting us go home until she is much much much better than she is right now. I am not even sure myself who is in what camp (and it seems to be GI vs. ID, but I think they both swap with each other depending on the hour’s events). Anyways, I have the distinct impression that even if we get to go home “soon”, its still going to be another week or so. If we are “in for the long haul”… well. i just can’t think about that right now.

I know that Kendall needs a lot closer observation than what she has been getting. We have been dealing with stuff on our own at home for far too long now that should have been addressed months ago. I am very glad that I feel like our team up here is recognizing that there are things about Kendall that are not “ok” or should be moved out of the “watch and see” category and into the “do something about it” category. They have Kendall under very close watch, because right now she is still deep in the woods of being “pretty darn sick”.

If I don’t wrap this up soon everything will have changed before I hit publish, so here we go:

We are praising God that her surgery to remove the port went very smoothly last nite, and that we FINALLY may have gotten a cohesive anesthesia protocol in place. i also now know two docs who I will request every single time we have to have a procedure. (this is a very good thing!)

We are praising God that right now, her respiratory status is hanging strong. I am sure that the second part of this flu bug (the wicked junky coughing) is very close behind, but right now, it is giving her enough of a break that she can focus on just resting enough to let her internal good guys fight the plastic loving bad guys.

Praise God for a good 4 hour stretch of GOOD restful sleep she got this morning finally! If she can get another one or two of those in today, I think we will start making some big progress.

Please continue to pray that:

Kendall’s body can keep up the fight against the bacteria and yeast in her blood.

Pray for her to be able to be painfree enough that she can fall asleep, so she has the rest to fight. If she is asleep, she is not kicking around her foot with the IV in, and making that any more precarious either. When she is asleep, her body is able to use all of its energy towards making more good guys to fight the bad guys. When she is asleep, her heartrates, fever, blood pressures, and pain levels are all much lower, and that is a good thing.

Pray that this IV holds for the rest of today. We will cover tomorrow when tomorrow comes. For today, I am just praying for 12 more hours.

Pray for our other girls – who are in limbo land again, as they so often are when sissy is in the hospital. My heart feels torn in 5 different directions and places for each of my family members, and I hate not being able to keep anyone happy, or be in five places at once.

Thank you for your faithful prayers, and for checking on us.

terra